Good Morning, Sunshine!

After what feels like weeks of freezing cold (for us) temperatures and clouds, the sun is shining and it is a balmy (relatively speaking) 40 degrees outside!

Rebekah had a great night last night! She had two bottles before bedtime and then slept through the night (read: Mommy got to sleep through the night!!). She had another good bottle around 9:30 this morning and is snoozing again. I am so thankful for a good night of sleep! After only sleeping about 2 hours Monday night, I was pretty much running on adrenaline yesterday. I was beginning to feel much like a zombie by last night!

We still haven't tried using Rebekah's g-tube yet. I am currently waiting on the doctors to round so we can make some decisions about Rebekah. Other than the uncertainty of her g-tube, she looks great. The nurses removed her oxygen this morning, and her sats are staying in an acceptable range, and Rebekah has not had a fever since yesterday afternoon. It seems that whatever was in her system has made its way out. Now the questions remain as to what exactly did happen and is there any way to prevent or treat the cause so it does not happen again. Those are questions that I hope to have answered today.

I am guessing that if all goes well today for Rebekah (and if there are no further tests that need to be done) that we will be discharged tomorrow. That is only a guess from my very un-medical background, so we will see what the doctors have to say.

That's about it for now. I will update later when I have more information!

Nancy

Better Trends

So it seems that whatever little Miss Bekah's problems are, she is slowly starting to regain lost ground. We are still not using the g-tube until we meet with the doctors tomorrow to see if they want to do any further testing with it, but we have been given the green light to resume bottle feeding. So far Rebekah has had two bottles of breast milk tonight and she has done well. Her fever has also dropped throughout today, which is always a good sign.

All tied up in tubing!

Tonight's plan is to bottle feed as much as Rebekah tolerates it and hopefully catch up on some much-needed sleep! We will see what tomorrow holds when we get there. :)

Nancy

P.S. We'll sleep after the fire alarm, that is!

Much Needed Update!

Hi, all! I apologize for the somewhat vague and cryptic update earlier today. Rebekah was admitted to Greenville Memorial around midnight last night, and the first room we were in did not have enough internet signal for me to access the blog. So, I had to send a post from my cell phone and I was allowed only 160 characters. I was trying to be as brief and informative as I could get into 160 spaces!! :)

Rebekah is doing much better this afternoon, but we still have not found the cause of her distress. When we arrived at the ER yesterday evening, Rebekah was retching badly, not taking a bottle and beginning to become dehydrated. After some quick tests to rule out the flu and a few other things, the doctors decided to admit Rebekah to see how she did overnight. We ended up in the PICU because there were no beds on the general pediatric floor, and I was thankful that we were in the PICU. From midnight until about 5:00 am, Rebekah was very fussy and had several severe bouts of retching; so much so that she was having a hard time keeping her oxygen levels up and had to be put on oxygen. The doctors started IV fluids to keep her hydrated, and we attempted to give her the normal continuous feed that she would have gotten through the night at home, only at half the amount (13 cc's an hour instead of 26). In about thirty minutes, Rebekah's stomach became very swollen and hard as a rock. The x-ray technicians were called to do an x-ray to check for obstructions and placement of the g-tube. By the time they got to Rebekah's room about 45 minutes later, the swelling had dissipated and the x-rays were normal. So, the doctors decided to discontinue the feeds until further tests could be done today, and we finally got to sleep around 5:30. If this post tends to ramble and make no sense, I'm blaming it on lack of sleep! :)

Rebekah has not had any feeds today, either by bottle or by g-tube. She developed a fever this morning (101.5 was the highest) and has continued to need a small amount of oxygen to keep her sats in an acceptable range. Around 2:00, Rebekah and I went downstairs to radiology to have a contrast study done to check again for any obstructions or g-tube problems, and the doctor was not able to find anything wrong. So, now we are waiting to hear back from the pediatric surgeons to find out what they want to do next. Rebekah seems to be resting comfortably and has been sleeping off and on for most of the day. It seems that we will be taking this hospital stay one day at a time to see what happens next.

We are now in a room on the general pediatric floor, and I have internet now (obviously! :). So hopefully I will be able to keep everyone more up-to-date on how Rebekah is doing. Hopefully we will be able to get a little more sleep tonight than we did last night.

Nancy

Update: Rebekah is at Greenville Memorial with significant abdominal distress. She is also running a fever and having problems with her g-tube. Please pray.

News

Miss Rebekah has had a busy week! After her cardiology appointment on Tuesday, Rebekah saw her pediatrician on Wednesday. We discussed a variety of information.....feeding, development, Synagis shots and congestion.

Rebekah will be getting her Synagis shots every month at her pediatrician's office during RSV season. This series of shots is for protection against RSV, which is a cold virus that can cause severe complications in infants. The complications can be fatal in babies whose immune system, heart or lungs are already compromised. We are very thankful that Rebekah qualified for the shots and that she is able to get them at her pediatrician's office!

As for feeding, we are marching onward! Rebekah has been given the green light to begin solid foods. We are beginning with a teaspoon of rice cereal and will be working up to a tablespoon of cereal twice a day. We want to start slowly to make sure Rebekah's system will handle the addition of cereal. If Rebekah does well with the cereal, we will begin working in other foods in a couple of weeks. So far, the cereal has been going down well. We are continuing the nighttime feedings as well to help with Rebekah's calorie intake.

As far as development, Rebekah is moving right along! She is smiling, babbling, cooing and interacting with us, especially with her brothers. Rebekah is grasping toys, transferring toys between hands and bringing toys to her mouth. We are still working a lot on the physical development - rolling over, sitting up and holding her head stable consistently. We are thankful for our therapists and their work with Rebekah!

Rebekah is still struggling with some respiratory congestion. We suspect that Rebekah is teething, but the congestion is a problem either way. The congestion is not bad and does not seem to affect her breathing much, so we are just watching it for now. Hopefully it will clear up on its own without any intervention.

We also saw the pediatric surgery group here in Greenville this week so they could take a look at Rebekah's g-tube. We have had problems with the mic-key button that Rebekah has deflating every two to three weeks (it should be lasting 3 to 4 months), so we wanted a second opinion. The surgeon has ordered a new g-tube and it should be in sometime early next week. When it comes in, they will replace Rebekah's current tube with a slightly different one. The surgeon also ordered a different size tube than the one Rebekah currently has, so we are hopeful that it will be a better fit.

That's all the latest news for now. Rebekah has a week off with no scheduled appointments other than the g-tube replacement when it arrives. We are hoping for another good week and some more weight gain!!

Nancy